A Short Ride in a Fast Machine
There ’s a dream I’ve had repeatedly in my life, including quite recently. In this dream, I am driving down a long, remote West Texas road at high speed, with no other cars around me. I’m going fast, in that way you hurtle forward on a desert highway when the perspective tricks you into picking what feels like leisurely pace until you look down and you’re doing ninety miles per hour. The sun is setting, the sky exploding in reds and oranges and a deepening purple.Suddenly, without warning or drama, the wheel comes off in my hand. I ’m holding it, gripped with panic, as the car continues down t...
Source: Schuyler's Monster: The Blog - November 25, 2019 Category: Disability Authors: Rob Source Type: blogs

Sixteen Years of Monster Life
Sixteen years ago today, everything changed. I mean, nothing changed, but everything changed. Schuyler was diagnosed with polymicrogyria on this day in 2003.I think back to that day sometimes, a day that I described in the prologue to my book. In a lot of ways, it marked an end to the person I was at the time, probably a lot more fun but also more selfish and seriously lacking in self-reflection. It also began my transition to the person I am now: smarter, more sensitive to the people around me, more socially aware and a stronger advocate, but also more cynical, more curmudgeonly, a bit of a scold and a wet blanket, a...
Source: Schuyler's Monster: The Blog - July 31, 2019 Category: Disability Authors: Rob Source Type: blogs

Three Weeks Broken
Here ’s a fun fact that I just recently learned. When they (the people who make up such things, almost certainly with a clipboard in hand) determine survival rates for people who survive procedures such as open heart surgery, they don’t just count those who made it off the table and back to their roo ms. For some major categories, they actually measure the rate of survival for thirty days, beginning with the surgery and ending with the cake decorated with“ONE MONTH DEATH-FREE, WOO!” in heart-healthy icing on top.So this is perhaps a bit premature. Watch for a posthumous“edited to add: Oops, ne...
Source: Schuyler's Monster: The Blog - March 9, 2019 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

Just One of Those Things
Last week I had a heart catheter procedure, to measure the amount of blockage in my shitty, shitty heart and possible put in a stent or two. Put them in, send me home, back to work in a day or two, right?That ’s not what ultimately happened. No, I’m going to have open heart bypass surgery. Well. I didn’t see that coming.Tomorrow afternoon, I meet my heart surgeon, hopefully to get this thing scheduled. I ’ll meet the man who will literally have my life in my hands. So, you know, big day.I ’ll admit it, I’ve been in a weird, unpleasant emotional place ever since I found out where this who...
Source: Schuyler's Monster: The Blog - January 15, 2019 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

Matters of the Heart
So I guess I ’m going to talk about this thing, which has nothing to do with disability advocacy or Schuyler, except of course it does, because those are the parts of my life that I couldn’t separate from the rest even if I wanted to, and I very much don’t.Last March, as you might remember, I had a hospital scare that ended in me getting my own health regimen back on track. That day sucked, to be sure, and it was followed by plenty more that were also pretty awful. But it ended up for the best, I suppose. I got better and my health improved to a point where it was more solid than it ’s been in years...
Source: Schuyler's Monster: The Blog - December 17, 2018 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

Lily Pads
Okay, so let ’s get this out of the way first. I was wrong. I was very, very wrong.A few years ago, I wrote a blog piece about something I saw online, a photo of a group of speech language professionals seated around a table, communicating with each other using AAC devices. To my reactionary eye, the photo was troubling. It felt like just one more exercise for able-bodied people to “get” what it must be like to have a speech disorder like Schuyler’s. It looked bad to me in part because I was seeing it linked on the Facebook page of an AAC company, which felt unseemly to me. Worse to my eyes was the ...
Source: Schuyler's Monster: The Blog - October 17, 2018 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

Uncharted: An Exploration of AAC, Advocacy and Agency
October 11, 20186:00pmUncharted: An Exploration of AAC, Advocacy and AgencyFeatured speaker, with Schuyler HudsonBridgeway Academy2500 Medary Ave, Columbus, Ohio 43202Please RSVP to Janelle Maur atjmaur@bridgewayohio.org to let us know if you will be attending. $5/person and $20 per family maximum. CASH ONLY at the the door. Bridgeway Academy welcomes Robert Rummel-Hudson and his 18-year-old daughter Schuyler for a presentation and discussion about advocacy and agency for users of AAC (Augmentative and Alternative Communication).Robert Rummel-Hudson is an author and advocate based in Plano, Texas.His 2008 memoir,...
Source: Schuyler's Monster: The Blog - August 27, 2018 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

The Few Things
There ’s a lot I could tell you about Schuyler’s trip to Gold Coast, Australia for the2018 International Society for Augmentative and Alternative Communication (ISAAC) Conference, where she took part in the Dare to LEAD workshop for selected participants who use AAC technology to communicate. There are a great many stories to tell about our trip.I could tell you about the sense of adventure that accompanied a trip to the other side of the planet, or about Schuyler ’s joy in discovering all the differences both tiny and significant between the US and Australia.I could tell you all about how she finally got...
Source: Schuyler's Monster: The Blog - July 30, 2018 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

Community of Souls
“I thought I was the only one.”It was a surprising thing to hear from Schuyler. It never occurred to me to think that she really believed she was all alone with her Polymicrogyria, and on an intellectual level, I know she understood that she wasn ’t literally the only person in the world with it. But it wasn’t hard to understand why she would feel that way, or why she now understood just how very untrue that feeling was.She quietly made that statement to me as we sat at the Polymicrogyria Family Conference in Denver last weekend, listening to the keynote address by Australian writer, speaker and lif...
Source: Schuyler's Monster: The Blog - July 18, 2018 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

The Folly of Fortune-Telling
In the spring of 2005, Schuyler was evaluated by the diagnosticians and special education educators at her school in Manor, Texas, near Austin. They concluded that her fine motor issues would most likely preclude her ever being able to write by hand, and while the extent of her developmental disability was still undefined, it was unlikely that she would ever be able to read or write in any meaningful way.Additionally, they saw no indication that Schuyler would ever be able to utilize a high-end dynamic voice output device. Such a device was deemed “not educationally necessary”.In the summer of 2018, Schuyler an...
Source: Schuyler's Monster: The Blog - June 10, 2018 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

No More Hiding
Schuyler ’s time in high school is quickly drawing to a close, faster than either of us are emotionally prepared for. As part of that transition, her percussion studio at Plano Senior had their end-of-the-year pool party yesterday, an annual event that concludes with awards, remembrances of the graduating seniors by her percussion director and a round-the-room sharing and appreciation by all the students in the class.The final award given is a kind of spirit award, but more than that. It ’s named after a former student, one who brought so much enthusiasm and positivity to the band and had such a deep effect on ...
Source: Schuyler's Monster: The Blog - May 21, 2018 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

The Care and Feeding of Monsters
I recently had the surreal but entirely positive experience of revisiting my book on the occasion of its release, ten years after publication, in audiobook form. I began listening as a kind of quality check, bracing myself for the voice actor to introduce “Shooler’s Monster”. (He didn’t; he was actually a fantastic actor, and I couldn’t be more pleased that he was the one who got to spend nine hours in a recording booth instead of me. You were all spared my stuttering, monotone twang. You’re welcome.) I began listening to the first chapte r, and then, like a drunk who blacks out and then...
Source: Schuyler's Monster: The Blog - May 6, 2018 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

Schuyler's Australian Adventure
Click here to donate to Schuyler's Australia fundSchuyler Hudson is a remarkable young woman with a brain malformation that changes how she experiences the world but does not stop her from living a rewarding and meaningful life. Since the age of five, Schuyler has used assistive speech technology to help her communicate with and experience the world around her. Now eighteen, Schuyler is preparing to graduate from high school and begin her adult life, using AAC technology to help her find her own way even with her profound differences.This summer, Schuyler has the opportunity to participate in a leadership workshop with a s...
Source: Schuyler's Monster: The Blog - April 11, 2018 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

The Big Fall
I ’ve always known that this fall, and I mean specifically the autumn of 2017, was going to be a big deal. The numbers line up in an interesting way. If you’re a young person and you’re having a child at the age of thirty-two, do the math. It means you’ll turn fifty the same year your kid turn s eighteen.Which is what ’s about to happen here.It ’s funny how you can look forward to, or perhaps dread, a coming change and still be at least mildly surprised at how it manifests itself. I guess that’s been a constant in raising Schuyler, and I suppose in parenting any kid with a signific...
Source: Schuyler's Monster: The Blog - October 28, 2017 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

So it goes.
I haven't written much about Las Vegas. Part of the reason is that it turns out Schuyler and I have a random weird association with the event. Nothing exceptionally personal, but one of those “goose walked over my grave” kinds of things.Almost eight years ago, two of our dearest friends got married in Vegas, and since it was on Schuyler ’s tenth birthday and they adore their goddaughter, they turned their reception into a birthday party for her as well, with a beautiful cake and some of the people she loves most. The photos I took of Schuyler that evening are among my favorites ever, as are the memories w...
Source: Schuyler's Monster: The Blog - October 3, 2017 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

Lulu
Today we said goodbye to a member of our family. Today, we lost sweet, sweet Lulu.She joined our little family fourteen years ago, at a difficult time for us. In the fateful summer of 2003, in the quest to discover the reason for her wordlessness, Schuyler underwent a very traumatic MRI, one where she had to be anesthetized through an IV in the back of her hand. It was awful, and it left us all feeling exhausted and emotionally drained. “You know what?” I said a day or two later. “We’re going to get a motherf.ing puppy!”And that ’s how Lulu came to join us.She was the smallest in her lit...
Source: Schuyler's Monster: The Blog - July 28, 2017 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

Season of Change
This week atSupport for Special Needs:Excerpt: This will be Schuyler ’s senior year in high school, so everything she does will be one in a series of “the last time I’ll get to do this” experiences. For Schuyler and kids like her, much more than for their neurotypical classmates, this is daunting. Schuyler’s future remains clear and imaginable, if not entir ely predictable, for maybe ten months. After that, it’s a wall of creeping mist. Does it conceal rich and meaningful adult experiences, or is it a Stephen King kind of mist full of fear and danger and face-eating monsters? Your g...
Source: Schuyler's Monster: The Blog - July 27, 2017 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

Warriors
Today atSupport for Special Needs:Excerpt: Social justice warrior. SJW, to use the not-quite-clever abbreviation. Why would that ever be an insult with any real bite? To those who use that term in a derogatory way, I suspect it sounds funny because they ’ve never lived a life where societal injustice has ever left a mark on them or anyone they particularly care about. Do you occupy a world of privilege without ever actually looking outward with empathy or compassion? Then I suppose the idea of people who fight for the dignity and equity of vulner able populations might seem silly to you. I’ll give you that...
Source: Schuyler's Monster: The Blog - July 17, 2017 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

The Monster We All Feed
Today atSupport for Special Needs:Excerpt:  We live in a society where rape culture isn ’t just a thing, but a gigantic thing. It’s a monster that we feed constantly, with our popular media and our societal privilege and an institutionalized misogyny that permeates our judicial systems and is now entrenched and protected at the highest levels of the executive. I wish I’d done mor e in the course of my life to fight that culture of rape and misogyny. I wish my commitment to fighting it had begun in my heart because I’m a human being and not because I’m the father of a daughter. Like t...
Source: Schuyler's Monster: The Blog - June 28, 2017 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

Father ’s Day snapshot
Today atSupport for Special Needs:Excerpt: When Schuyler and I walk together, she ’ll still take my hand or lean against me. She’s more affectionate now than I probably have any right to expect. I always tell myself “You’d better enjoy this; one day she’ll be too embarrassed to show you much affection in public.” But I don’t know. She’s seventeen now, and while sh e’s still changing and learning so much as she rockets towards her future after high school, it’s starting to feel like we know the person she’s going to be. Looking at Schuyler now is to see ...
Source: Schuyler's Monster: The Blog - June 16, 2017 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

Productive
This week atSupport for Special Needs:Excerpt: So many changes. So much uncertainty. The universe just strapped a rocket pack to Schuyler ’s back. We shall see what this phase of her life ultimately looks like, and how well she’ll do as she steps out into a world of superficial but pervasive human valuation. It’s a lot to take in, and I am perhaps more worried about her than I’ve been at any time since her diagnosis fourteen y ears ago. But even with all her anxiety and also my own, I have to say it. I like her chances. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - May 31, 2017 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

Another Coda
Today atSupport for Special Needs:Excerpt: Her ultimate survival of her junior year is in large part due to the people who watch out for her, quietly and without drama, and who make it a little easier to put her on that bus in the morning and send her once more unto the breach, dear friends. Schuyler ’s true friends have turned out to be the ones we didn’t see coming. There are the band directors who have watched out for her and striven to understand what makes her tick and to build a safe but unrestrictive space around her. There’s the assistant principal who has taken exactly ZERO of her nonsense b...
Source: Schuyler's Monster: The Blog - May 26, 2017 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

I see you. I see what you ’re doing.
Today atSupport for Special Needs:Excerpt: We push back against ableist speech, over and over again, because we hope, against all the evidence to the contrary, that things might get better. And they did just a little, for a while, I think. And then a candidate for the presidency made fun of a reporter with a disability, and the citizens of this country saw the video of his grotesque behavior and decided that yeah, that ’s our guy. And while that at least gave us a platform for advocating for disability rights, particularly at the Democratic National Convention, it also gave people license to say and do terrible ...
Source: Schuyler's Monster: The Blog - May 18, 2017 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

What she needs
I haven ’t posted over here in a while, not exclusively. I’ve been engaged in a more professional weekly blogging gig atSupport for Special Needs, and I ’ll be back over there next week. This has been a little two week hiatus, albeit an unplanned one. I try not to get too insanely personal or profane over there, and in some ways a slightly more measured tone is probably good for me. When I’m over here, there’s no telling what I might say(balls), after all. I guess this has just sort of become my personal little sandbox now, and that ’s kind of nice. (Asshole! Tits!)I guess the primary re...
Source: Schuyler's Monster: The Blog - May 13, 2017 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

Safe Spaces
This week atSupport for Special Needs:Excerpt: Safe spaces seem antithetical in some ways to the idea of eventual independence, but the truth is, we all need our supports. It ’s different for kids like Schuyler as they grow out of childhood, of course. Her independent life is probably always going to come with an asterisk, and the thing I’ve been working on lately, with a good deal of success, is being okay with that. Schuyler requires safe spaces, but they’re not fake places, nor are they segregated or isolated. And within those tended gardens, I think astonishing things are going to grow. (Source: ...
Source: Schuyler's Monster: The Blog - April 27, 2017 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

I think I ’ve got a quarter if they need one.
Today atSupport for Special Needs:Excerpt: Weird? How are we measuring “weird”? What does “weird” look like for someone like Schuyler? Or for anyone else? I mean, we spend weekends driving around looking for invisible monsters to catch with our phones. Our threshold for weird might not necessarily line up with the purveyors of this particular behavioral invento ry. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - April 19, 2017 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

Monster Island
Today atSupport for Special Needs:Excerpt: I ’m not sure where I’m going with this post, because I’m not sure what the takeaway is. Schuyler had a good time, except when she very much didn’t. Her social anxiety only hit after her seizure, but boy did it land hard after that. She laughed hard most of the time, including once so enthusia stically that we literally heard her from the other side of the resort. But she also cried harder than I can really remember her crying for many years. She was probably happy 80% of the trip, but that other 20% had real teeth and claws. Schuyler adored the beach ...
Source: Schuyler's Monster: The Blog - April 6, 2017 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

We've met before.
Today atSupport for Special Needs:Excerpt: Those of us raising our kids in public school environments have a pretty good idea of what de minimis really looked like in its worst case scenarios. We ’ve subsisted on the scraps that fall from the educational table. For the Supreme Court to now compel public schools to give our kids the opportunity to make meaningful, substantial and “appropriately ambitious” progress? That has to potential to change our lives and the futures of our kids. W e’ll deal with the private school tuition issue later. (Private schools mostly don’t want our kids anywa...
Source: Schuyler's Monster: The Blog - March 29, 2017 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

The Seventy-five Percent Solution
Today atSupport for Special Needs:Excerpt: For Schuyler specifically, and for no doubt a great many of her peers, having the ability to pass for neurotypical in surface-level social interactions has probably given her an ambitious view of what her future could look like. If she can pass 75% of the time, that ’s probably enough to convince her that she could take on a life of total independence. And that’s great, but it’s also a problem, because that other 25% is where heartbreak lives. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - March 29, 2017 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

Inclusion is a work in progress
Today atSupport for Special Needs:Excerpt: So what do our kids need from an inclusive society, before we even consider their classroom environment? We could start with patience. And along with that, opportunity, in employment and independent living and carving out those places where my daughter Schuyler and people like her can develop their talents and use them. As a society, we ’ve built this structure that values contribution, but in a very limited scope. “What do you do?” We hear that question and we know what it means. “How do you produce capital? How do you feed the machine?” And tha...
Source: Schuyler's Monster: The Blog - March 9, 2017 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

Spaces for the Hard Stuff
This week atSupport for Special Needs:Excerpt: Schuyler continues to build a world around herself, and sometimes that means making space for the monsters and the earthquakes and the hidden traps that wait to spring out and destroy the careless. As a parent, it ’s tempting to try to soothe the world’s edges, but of course that’s counterproductive, particularly with a seventeen year-old, even one as different as Schuyler. She sees the grief of others and she tries to take it on herself, partly because she is literally the most empathetic person I’ve ever known, but also, I think perhaps she&rsquo...
Source: Schuyler's Monster: The Blog - March 2, 2017 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

The Persistence of Little Fish
Today atSupport for Special Needs:Excerpt: When I wrote about the little fish that quietly eat our kids up while we ’re busy watching for sharks, I had no idea how many little fish were going to spawn in the coming years, or how sharp their teeth would become. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - February 23, 2017 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

From the bottom of the sea
Today atSupport for Special Needs:Excerpt: Schuyler's world just became much, much larger, and as it turns out, that scares her as much as it scares me. Maybe more, because the world she sees and experiences isn't quite the same as that in which the rest of us live. She's got a lot more to process now, and this week, I think it became a bit too much. Throw some errant electricity into her brain, and a storm erupts. She rides it out as best as she can, and we with her. This one was bad, but there'll be no shipwreck this time. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - February 2, 2017 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

This is why.
Today atSupport for Special Needs:Excerpt: Schuyler was surrounded and engulfed and protected by a sea of women, and she understood, I think maybe for the first time, just how large her tribe could be. As she grows older, Schuyler's people becomes a more inclusive group, more intersectional. She took a big step at the march. Her disability advocacy took on more feminism that she'd felt or shown before. Her world grew bigger, and with it her protest and her advocacy. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - January 25, 2017 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

Exploring Worlds Both Dark and Lovely
Today atSupport for Special Needs:Excerpt: In taking my own focus inward to her more immediate world and trying to help as best I can, I feel like maybe I can recapture my own sense of autonomous self. I can't solve the Big Thing, but I can tell her what it was like when I was seventeen and trying to figure out if love was a thing for me. I can tell her what I got wrong, which weirdly seems to give her comfort. I have value as a cautionary tale, I suppose, which is true of my adult, parenting self as well. So many times, I feel like my fatherly approach to the walls that stand in her way is to keep smashing my face in...
Source: Schuyler's Monster: The Blog - January 19, 2017 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

Denial
Today atSupport for Special Needs:Excerpt: There are two kinds of deniers. There are the kind that are just goofy, like moon landing deniers. They're not hurting anyone, they're just being kooks, God bless'em. And then there's the other kind. September 11th was an inside job, they say. Sandy Hook was a hoax. The Holocaust never happened. Donald Trump wasn't mocking people with disabilities. These deniers aren't just trying to change the narrative to fit whatever their ideology might be. They are erasing people, they are taking the struggles and the particulars of the lives of vulnerable people or people who have been ...
Source: Schuyler's Monster: The Blog - January 12, 2017 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

Desensitized
Today atSupport for Special Needs:Excerpt: I recently read an article that posed a question that honestly hadn't occurred to me before. Can the perhaps inevitable hyper-vigilance that comes from parenting a child with a disability result in (or manifest as a symptom of) Post-Traumatic Stress Disorder? I'm mildly surprised that I'd never thought of it in those terms, since the obvious answer is yes, of course it can. And the question is more complicated because for parents of kids with disabilities, hyper-vigilance isn't necessarily an inappropriate response. Terms like " hyper-vigilance " and " helicopt...
Source: Schuyler's Monster: The Blog - January 4, 2017 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

" At least I think that's so... "
Today atSupport for Special Needs:Excerpt: I'm not going to try to pretend I'm hopeful, or that I believe the inherent goodness of my fellow citizens of the world is going to be our salvation. Maybe I should. Perhaps the first step to making it rain is seeding the clouds, I don't know. All I know for sure is that if 2017 is going to be survivable, if we're all going to get out of this intact and not epically broken, it's going to be because we did two things. Two things, just two, that's what I believe is necessary. They're easy, and they're hard. We need to take care of ourselves. And we need to take care of each oth...
Source: Schuyler's Monster: The Blog - December 28, 2016 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

To my Heart, at Seventeen
Today atSupport for Special Needs:Excerpt: You know the truth, which is something we've always tried to give you no matter how hard a truth it might be. You understand the life that your little monster has made for you, or has attempted to make for you, anyway. You've simply refused to accept those limitations as concrete. You've shamed those of us who've tried at various times to define the limits of the person who you can become. For that above everything else, I'm proud of you, heartburstingly so. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - December 21, 2016 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

The Value of Protest
Today atSupport for Special Needs:Excerpt:  Protest forms special needs parents into people we would not otherwise be, and sometimes honestly never wanted to be. We become accustomed to advocacy, to stepping up when doing so makes things weird for everyone else. We learn not to care about the awkwardness, because our protest is God's work, it's in the service of the thing that we do that matters the most, the building of an equitable place for our children to operate. Others may care, others may love our kids and want the best for them, but no one else bears the responsibility to get things right like we do. When...
Source: Schuyler's Monster: The Blog - December 16, 2016 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

The evolution of the dad hat
Today atSupport for Special Needs:Excerpt: The world of a teenaged girl with a disability is complex, in ways that aren't cute or sitcom-ready. We've discussed many times how dangerous the world is for women with disabilities, and how vulnerable they are to sexual abuse and assault. It's terrifying as a father; it's more terrifying for a young woman with a disability, and Schuyler is old enough to understand what's going on now, and what's at stake. Ten years ago, she was worried about werewolves. That's not what's waiting for her now, though. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - December 1, 2016 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

Thanksgiving 2016
Today atSupport for Special Needs:Excerpt: Through it all, Schuyler doesn't spend a lot of time reflecting on the hard stuff, certainly much less than her moping, sad-sack father does. She sees a world that she doesn't entirely understand, and she grabs at it, claws at it for the riches it hides from her. She adores her friends, even when their behavior baffles her. She trusts in people, right up to the moment they let her down, and then a bit more after that. Schuyler loves her family, and that includes her godparents and the people she has made a family space for in her heart, with a depth and unashamed loudness tha...
Source: Schuyler's Monster: The Blog - November 23, 2016 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

The next day, and the next
Today atSupport for Special Needs:Excerpt: But the days roll past, and the Big Scary Thing becomes more and more background as the Many Small Monsters continue their work. We don't make peace with it, because when we close our eyes, it's always there. ( " Ah, I can't remember! " cue laughter...) But we push it back as best we can, because the life he's mocking is a hard life, and it's hard and time consuming no matter who's the president. Our monsters aren't all that concerned with politics. Our devils don't vote. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - November 17, 2016 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

The New Danger of Difference
Today atSupport for Special Needs:Excerpt: When Schuyler gets up tomorrow and faces her weary and deeply disheartened father, she will be told that what's wrong with America isn't those like her who are different, or who insist on their humanity without limitations. What's wrong with America doesn't belong to her. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - November 9, 2016 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

A Simpler World
Today atSupport for Special Needs:Excerpt: I hate this election season, like I hate anything that I find difficulty in explaining to Schuyler not because it ’s complex, but because it’s just kind of bad. I feel like every time she hears me explain why a person running for president would lie or mock someone who’s different or say gross things, it dents her a little. Every realization that the world can be awful leaves a little scuff. I hate trying to make sense out of a nationally known comedian going on television and using hate speech to tell the world that she and her friends aren’t fully hu...
Source: Schuyler's Monster: The Blog - November 2, 2016 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

Two Brains
Today atSupport for Special Needs:Excerpt: I love Schuyler's brain, which might seem like an odd thing to say, given her own uneasy relationship with it. Schuyler's brain isn't like yours or mine, or anyone else's. It's broken, dramatically so, but that's not even close to the main point. The story of Schuyler's brain isn't that it's broken, but rather the extraordinary things she's accomplished with it regardless. Schuyler walks and dances and sings, and she laughs three distinct different laughs, including the one that I love most, the one I call her troublemaker laugh. Schuyler plays percussion in band; every autum...
Source: Schuyler's Monster: The Blog - October 18, 2016 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

Small expeditions
Today atSupport for Special Needs:Excerpt: Years from now, I hope we see these small expeditions as the beginning of Schuyler's true adventure, the one she takes on by herself, in a world that may be as unprepared for her as she is for it, but which will be hers for the taking nevertheless. (Source: Schuyler's Monster: The Blog)
Source: Schuyler's Monster: The Blog - October 5, 2016 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

Limits
Today atSupport for Special Needs:Excerpt: I've written many times about my duty as Schuyler's parent to be an overbeliever for her. I still think that's true; indeed, I hold that to be an essential truth more now than ever before. I find that if I believe Schuyler's capabilities reach beyond what we can see in the now, the rest is likely to follow. There was a time when we were told that Schuyler would never be able to write, or use a high end speech device, or even attend school, for that matter. Trying to accomplish more than that was considered overbelief by the physicians and educators and therapists in her life....
Source: Schuyler's Monster: The Blog - September 28, 2016 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

Check your local listings, and hold your breath
Today atSupport for Special Needs:Excerpt: I feel like there's been a subtle shift in how people with disabilities are perceived in the popular media. I think I heard more about the Paralympics in the media this year than ever before, although still not enough when you consider the extraordinary work the athletes put in. On-screen portrays of people with disabilities are becoming less of a big deal, although again, there's a lot of distance left to cover. And the notorious " R Word " seems to be slowly transforming into, if not a taboo word, at least one mostly perceived as being used and defended by low cla...
Source: Schuyler's Monster: The Blog - September 21, 2016 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs

Toll
Today atSupport for Special Needs:Excerpt: Being a special needs parent is an amazing experience, but it runs a deficit. The obstacles that society throws up. The constant struggle to be taken seriously by professionals and educators and family and, well, the world. The ticking clock that runs out way too quickly on the protective cushion our kid's childhood provides until it very much doesn't. The isolation. The pain and anxiety our children feel and our frustrating inability to explain or make right the things that impair their young lives. They learn to find their way, and we are central to that discovery. But it t...
Source: Schuyler's Monster: The Blog - September 14, 2016 Category: Disability Authors: Robert Rummel-Hudson Source Type: blogs